Disclosure

DisclosureToday I started the process of disclosure – letting family and close friends know about my condition, what will happen next and the prognosis. Speaking to close family was relieving in that I no longer feel a need hide this from them. I also  emailed a series of close friends the following text:

Some time in the next few weeks I will have to go into hospital for an operation to remove a growth from my Pituitary gland. I will need a general anaesthetic and will probably be in hospital for 4 days. I will walk out and am promised that with the exception of being a bit ‘bunged up’ for 3 or 4 weeks I will be fine. I don’t yet know exactly when, I have an appointment with the neurosurgeon on 7th September and will know soon after that when the date is for surgery.

So, what is this all about? Well, years ago I volunteered for something called UK Biobank. Biobank consists of health and lifestyle data from 500,000 volunteers who committed to being followed and tested over a long time – it’s about providing medical researchers with a bank of longitudinal data with which they can work. So in May this year I turned up at Salford for a range of tests, one of which was a MRI scan of my head. Well, they found something unexpected – a Pituitary Adenoma, which is a non-cancerous growth. It’s about the size of a walnut and the problem is that it is pushing on my optic nerve such that I have already lost a bit of visual field and it will only get worse unless we take it out. There is no other treatment for this size and type of adenoma.

The fun is that the operation will be under general anaesthetic and will be done by pushing some tiny surgical instruments up my nose, cutting through to get to the area around my pituitary and then sucking out the offending adenoma! Transphenoidal Surgery, if you want the technical term!

I have to admit that I was scared shitless when I first heard about this, but the more I have learned, the happier I have become and now have no concerns about what is to happen. You don’t need to be bothered either. Apparently many people live their whole lives without knowing that they also have one of these adenomas, I’m just one of the lucky ones who found out before it did any harm to my eyesight.

I have been keeping, and am about to publish, a blog based on my experience as the situation developed over the last few months. I hope you are not disappointed in me for not disclosing this sooner, but I wanted to be clear about what was going to happen and the consequences before I bothered anyone (except Suzanne) with this. Even my family only found out yesterday.

As for Suzanne, she has been the classic ‘rock’. She has shared the worry and the relief as we have seen consultant after consultant. She’s the one who thinks about the worst case scenario while I plough on in my relentlessly optimistic way. She is also the one who asks the ‘technical’ questions – I knew that Health Sciences degree would come in handy sooner or later! I love you Suzanne.

I am not surprised, yet I am still touched by the immediacy and supportiveness of responses from those dozen or so people who received the personal disclosure. Phone calls within minutes of receiving my email, return emails shortly afterwards. Thank you everyone – I really want to say that “I really am well and…”

And how intriguing that only yesterday Sue Perkins (yes, I am a Bake Off fan) also disclosed her condition. Hers is a ‘functional’ adenoma that actively secretes higher than normal levels of certain hormones; mine is ‘non functional’ in that it secretes nothing and the only real problem is the effect on the optic nerves of the physical size of this lump in the head.

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